Chronic Diseases, Misc

This article evaluates seven strategies for managing the high costs of GLP-1 receptor agonists (GLP-1RAs) like semaglutide and tirzepatide for weight management: complete exclusion of coverage, annual cost increase caps, lifetime cost caps, tiered access, formulary reevaluation, subscription payment models, and patent reform. The authors assess each strategy against three ethical objectives: benefiting people and preventing harm, showing equal moral concern, and mitigating disadvantage. Complete coverage exclusions, arbitrary reimbursement caps, and lifetime limits are deemed unethical as they fail to meet (...) these objectives. Tiering access based on relative benefit is considered justifiable, though current implementation often unfairly favors diabetes over obesity treatment. The authors recommend formulary reevaluation as the most ethical approach for smaller health plans, allowing them to prioritize more cost-effective treatments. For larger payers with market power and for governments, subscription payment models and patent reforms are potentially ethical solutions if implemented sustainably. The authors conclude that health plans should avoid ad hoc restrictions on GLP-1RAs in favor of comprehensive policy reforms that ensure sustainable access to these and future breakthrough treatments. (shrink)

There is a lot of conceptual engineering going on in medical research. I substantiate this claim with two examples, the medical debate about cancer classification and about obesity as a disease I also argue that the proper target of conceptual engineering in medical research are experts’ conceptions. These are explicitly written down in documents and guidelines, and they bear on research and policies. In the second part of the chapter, I propose an externalist framework in which conceptions have both the (...) explanatory power of psychological concepts and that of semantic concepts. It is likely, however, that human activities and practices distinct from medical research, and regulated by different practices and epistemic rules, call for different targets for conceptual engineering. I conclude with indicating an open agenda of problems for philosophers of medicine interested in conceptual engineering. (shrink)

Introduction/objectives Vaccination is a process that involves individual, social, and ethical aspects, beyond public governance of vaccines or vaccination as a public health concern. The aim of this study is to describe the sociocultural and moral narratives that influence the decision to vaccinate in general and to vaccinate against COVID-19 specifically, among patients at the rheumatology units of two hospitals. Methods Qualitative study involving individual semi-structured interviews following an interview guide. We conducted a thematic analysis using the ATLAS.ti software, with (...) further triangulation to verify concordance and aid in the interpretation of the data from a medical anthropology framework and using a narrative ethics approach to gain insight into the participants’ underlying moral values. Results We interviewed 37 patients in total, along with 3 rheumatologists. Five core themes emerged from the analysis to understand the decision to vaccinate: (1) information about vaccines and disease, (2) perceived risk–benefit of vaccination, (3) the physician–patient relationship, (4) governance of vaccination programs, (5) attitudes towards vaccines. Individual and family experiences with vaccination are diverse depending on the type of vaccine. The COVID-19 vaccine, as a new medical technology, is met with more controversy leading to hesitancy. Conclusions The decision to vaccinate among Mexican rheumatic disease patients can sometimes involve doubt and distrust, especially for those with a lupus diagnosis, but ultimately there is acceptance in most cases. Though patients make and value autonomous decisions, there is a collective process involving sociocultural and ethical aspects. (shrink)

Assumptions about obesity—e.g., its connection to ill health, its causes, etc.—are still prevalent today, and they make up what I call the medical model of fatness. In this paper, I argue that the medical model was established on the basis of insufficient evidence and has nevertheless continued to be relied upon to justify methodological choices that further entrench the assumptions of the medical model. These choices are illegitimate in so far as they conflict with both the epistemic and social aims (...) of obesity research. I conclude the paper with a partial solution to these epistemic and social shortcomings. (shrink)

The prevalence of obesity, metabolic syndrome, and the associated long-term chronic diseases (cardiovascular disease, type II diabetes, cancer, Alzheimer’s disease, depression) have reached epidemic levels in the United States and Western nations. In response to this public health calamity, the author of this paper presents and defends a novel bioethical argument: the consistency argument for outlawing SSBs (sugar-sweetened beverages) for child consumption (the “consistency argument”). This argument’s radical conclusion states that the government is justified in outlawing SSBs consumption for child (...) consumption. The reasoning is as follows: if one accepts that the physical harm caused by chronic alcohol consumption justifies the government outlawing alcoholic beverages for child consumption, and there is strong evidence that comparable physical harms result from chronic SSBs consumption, then, mutatis mutandis, the government is also justified in outlawing child consumption of SSBs. To support this argument, the author provides extensive evidence based on epidemiological observational studies, interventional studies, controlled trials, large meta-analyses, and the pathophysiology and biological mechanisms of action behind SSBs and chronic disease. Chronic consumption of large doses of SSBs and alcoholic beverages both drive the same diseases: obesity and insulin resistance, cardiovascular disease, hypertension, and cancer. Chronic SSB consumption carries the additional risk of Alzheimer’s disease, dementia, and depression. The author concludes this paper by considering prominent objections to the consistency argument, and then demonstrating that each objection is unsound. (shrink)

Background: Dialysis patients are more vulnerable to viral infections, including Human Parvovirus B19, which is the only human pathogenic parvovirus. It is highly erythrotropic and preferentially replicates in erythroid progenitor cells. Parvovirus B19 is associated with kidney disease in three settings: Acute glomerulopathy, anaemia in end-stage renal disease, and kidney transplantation. This study aimed to detect parvovirus B19 infection among individuals undergoing dialysis. Methods: A case-control study was carried out in Kirkuk from April 4 to November 11, 2023. This involved (...) patients with chronic renal failure admitted to Kirkuk Teaching Hospital/Haemodialysis Center. A questionnaire was used to collect clinical data such as age, gender, body mass index, and medical history. Molecular detection of parvovirus B19 was done using Real-time PCR.Results: The study involved a predominance of male patients (75%) compared to females (25%). Most patients were 60 years or older (45%). In terms of Body mass index, the majority fell into the 20-25 range. Patients with chronic renal failure frequently reported hypertension (60%), followed by diabetes mellitus (28.33%), and cardiovascular disease (11.66%). Results highlighted a significant increase in Parvovirus B19 infection rates with prolonged dialysis, and RT-PCR detected Parvovirus B19 in 18.3% of patients.Conclusion: Parvovirus B19 was detected in end-stage renal disease and could significantly contribute to the development and progression of the disease. (shrink)

Chronic illnesses such as diabetes, cardiovascular diseases, cancer, and mental health disorders are increasingly contributing to the global health burden, requiring consistent monitoring, timely intervention, and patient-centric care. Traditional healthcare systems often fall short in addressing these needs due to challenges such as limited access, delayed appointments, and minimal patient engagement between visits. Chronic Connect is a smart healthcare application designed to bridge these gaps through the integration of artificial intelligence (AI) and mobile technology. The app facilitates early detection and (...) management of chronic diseases by analyzing user-input health parameters to predict potential health risks. Its intuitive design ensures accessibility for a wide demographic, including the elderly and users with limited digital literacy. The AI-powered engine continuously learns and adapts to individual health trends, offering personalized insights and encouraging timely medical consultations. Additionally, the platform supports patient education, remote monitoring, and real-time data sharing with healthcare providers, thus fostering a collaborative healthcare ecosystem. By empowering users to take control of their health and enabling providers to deliver proactive care, Chronic Connect aligns with the modern principles of preventive, participatory, and personalized medicine. Its scalability and adaptability make it a valuable tool in both urban and rural healthcare settings. Overall, Chronic Connect exemplifies how digital innovation can transform chronic disease management, reduce healthcare disparities, and improve health outcomes. (shrink)

Background Sickle cell disease (SCD) and Diamond-Blackfan anemia syndrome (DBAS) are two hereditary blood diseases that present significant challenges to patients, their caregivers, and the healthcare system. Both conditions cause severe health complications and have limited treatment options, leaving many individuals without access to curative therapies like hematopoietic stem cell transplantation. Recent advancements in gene and cell therapies offer the potential for a new curative option, marking a pivotal shift in the management of these debilitating diseases. However, the implementation of (...) these therapies necessitates a nuanced understanding of the ethical and social implications. Methods In this mixed methods systematic review, we explore the responsible development and implementation of gene and cell therapies for SCD and DBAS and aim to sketch a path toward ethically and socially sound implementation. Drawing upon principles of Responsible Research & Innovation and the 4A framework of availability, accessibility, acceptability, and affordability, we thematically analyze existing research to illuminate the ethical and social dimensions of these therapies. Following established PRISMA and JBI Manual guidelines, a search across multiple databases yielded 51 peer-reviewed studies with publication dates ranging from 1991 to 2023. Results Our thematic analysis shows that the theme of acceptability is heavily shaped by interactions between patients, caregivers, healthcare professionals and researchers, influencing treatment decisions and shaping the development of curative gene and cell therapies. Despite the generally positive perspective on these therapies, factors like the limited treatment options, financial constraints, healthcare professional attitudes, and (historical) mistrust can impede stakeholder decision-making. While acceptability focuses on individual decisions, the themes of availability, accessibility, and affordability are interconnected and primarily driven by healthcare systems, where high research and development costs, commercialization and a lack of transparency challenge equitable access to these therapies. This diminishes the acceptability for patients, revealing a complex interdependence of the themes. Conclusions The findings suggest the need for improved communication strategies in clinical practice to facilitate informed decision-making for patients and caregivers. Policy development should focus on addressing pricing disparities and promoting international collaboration to ensure equitable access to therapies. This review has been pre-registered in PROSPERO under registration number CRD42023474305. (shrink)

ABSTRACT Current attempts to understand unusually high rates of psychiatric illness in complex, chronic illnesses can be guilty of operating within an explanatory framework whereby there are two options. Either (a) that the psychiatric predicaments are secondary to the bodily condition, and (b) that they are primary. In this paper, I draw upon philosophical work on affect, contemporary empirical work, and qualitative first-person patient data to illustrate a much messier reality. I argue that affective experience is generally more complex in (...) such conditions, and that a variety of pre- and post-morbid causal factors dynamically interact such that the resultant psychiatric predicaments do not permit to classification as strictly primary or secondary to the bodily condition. Affective scaffolding, in my view, provides an apt theoretical framework for capturing this nuance. (shrink)

Goldstein’s conceptions of pathological states as specific relationships to the milieu, based on his clinical work and observations with First World War soldiers with brain injuries, pay unprecedented attention to chronicity as a particular form of the pathological, capable of stabilizing in forms of health. From this stems a concept of holistic care which pays attention to the person as a whole and to the possibilities for restructuring his or her relationship with the milieu. While the directions he took in (...) his clinical approach of brain-injured patients make him a pioneer of Physical and Rehabilitation Medicine, his reflection on norms and normality, and on the limits of medical action, rooted in a conception of health as “latitude de vie”, nevertheless distinguish him from the rehabilitation paradigm as it is sometimes described and criticized. In this respect, Goldstein’s conceptions seem to be fruitfully extended to the care and support of chronic illnesses and certain situations of disability today. (shrink)

This Viewpoint analyzes policies for covering GLP-1 receptor agonist drugs for obesity treatment across 13 high-income countries. It identifies four key lessons for developing coverage policies: 1) using up-to-date cost-effectiveness analyses that incorporate new evidence of benefits, 2) negotiating lower prices while preserving innovation incentives, 3) prioritizing coverage for specific populations rather than issuing blanket denials, and 4) treating obesity medications similarly to high-cost drugs for other conditions. It argues that blanket coverage denials are unethical and that countries should implement (...) targeted coverage policies that maximize benefits while managing costs. (shrink)

In Germany, the debate on preimplantation and prenatal testing is heavily influenced by the idea of an antagonism between prospective parents and their potential children. Underlying this antagonism is the assumption that prospective parents follow an ableist logic and do not regard the lives of children with a chronic illness as “worth living”. Taking the example of two rare genetic illnesses, Marfan Syndrome and Cystic Fibrosis, we investigate how persons who themselves are affected by these conditions view preimplantation or prenatal (...) testing for their condition in the context of reproductive decision-making. Our empirical research shows that chronically ill patients’ appreciation of their own life as a “life worth living” does not always translate into an unequivocal wish and readiness to give birth to a child that is affected by their condition as well and argue that taking their views into consideration adds an additional level of complexity to the debate. (shrink)

In our reply to critiques of our GLP-1 receptor agonist allocation framework, we explain that using potential years of life lost (PYLL) as a metric addresses racial health disparities without explicitly allocating resources based on race. This approach is "racism-conscious" and has legal and ethical challenges over race-based approaches. Meanwhile, though acknowledging the importance of cardiovascular risk assessment, we maintain in response to other interlocutors that focusing solely on immediate risk would ignore the broader goal of mitigating disadvantage. We emphasize (...) that our framework balances multiple ethical objectives beyond just maximizing medical benefits. (shrink)

Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults living with rare diseases. The concept of morally problematic situations arising from pragmatist ethics shows promise in understanding these experiences. The objectives of this study were to (1) acquire an in-depth understanding of (...) morally problematic situations experienced by adults living with rare diseases in the province of Québec and (2) to develop an integrative model of the concept of morally problematic situations. To this end, an online survey targeting this population was developed through a participatory action research project. Respondents provided 90 long testimonies on the most important morally problematic situations they faced, often in healthcare settings. An integrative model was developed based on various qualitative analyses of these testimonies and relevant literature. The integrative model showcases that morally problematic situations have causes (i.e., contextual and relational factors, personal factors, jeopardized valuations), have affective repercussions (i.e., emotions and feelings, internal tensions), prompt action (i.e., through empowerment strategies leading to the evolution of situations), and elicit outcomes (i.e., factual consequences, residual emotions and feelings, positive or negative resolutions). In sum, this study advances understanding of the moral experiences of adults living with rare diseases while proposing a comprehensive conceptual tool to guide future empirical bioethics research on moral experiences. (shrink)

Diabetes is a metabolic disorder characterized by chronic high blood sugar levels due to insulin deficiency or resistance. In type 1 diabetes, the pancreas fails to produce adequate insulin, whereas in type 2 diabetes, insulin production may be insufficient, or the body becomes resistant to its effects. Gestational diabetes occurs during pregnancy due to reduced insulin sensitivity. The prevalence of diabetes has been rising globally, especially in developed countries, driven by factors such as obesity, poor nutrition, lack of exercise, and (...) genetic predisposition. Women with polycystic ovary syndrome (PCOS) are at a higher risk of developing type 2 diabetes due to insulin resistance. Furthermore, diabetes is associated with various complications, including cardiovascular disease, diabetic retinopathy, kidney disease, and diabetic ketoacidosis. Type 2 diabetes often leads to severe long-term health consequences, including heart attacks, strokes, and limb amputations. In children and young adults, the progression of type 2 diabetes is more rapid and can lead to early-onset complications. Prediabetes, characterized by impaired glucose tolerance, serves as an early warning for diabetes and is linked to an increased risk of cardiovascular diseases. Early detection and lifestyle modifications, such as improved diet and increased physical activity, are crucial for preventing the progression from prediabetes to diabetes. While diabetes remains a significant public health and economic burden, preventive measures and early intervention can help reduce its incidence and related complications. (shrink)

The promise of genomic medicine lies in the opportunity to improve health outcomes via a personalized approach to management, grounded in genetic and genomic variation unique to an individual. However, disparities and inequities mar this remarkable landscape of genomic innovation. Prior efforts to understand these inequities have focused on populations for which genetic testing is relatively protocolized or where test utility varies greatly by ancestry groups, where equitable outcomes are more clearly defined. We therefore consider the current landscape of rare (...) disease genomics, in which diagnostic approaches vary widely and utility remains to be fully understood, and suggest a path forward: how ecosocial theory may be used to guide novel equity‐focused initiatives that incorporate illness narratives to improve population health. We present examples of narrative medicine in rare disease and reimagine the role this discipline may play in genomic sequencing studies, toward incorporation of the unique illness narrative into clinical genetics and genomics practice. Approaches that broaden the definitions of disease and of outcomes of interest will force the field to grapple with its racist history and begin to advance health equity and promote justice so that genomic medicine may truly deliver on its promise. (shrink)

ABSTRACT:Biomedical and philosophical traditions postulate the experience of pain either as quantifiable or as sociocultural phenomena. This critical assessment offers a close reading of Lara Parker’s Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics (2020) and Abby Norman’s Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain (2018), analyzing the authors’ use of language as a tool to comprehend and communicate pain. Norman’s and Parker’s memoirs narrate the lived experience of endometriosis, a condition diagnosed (...) almost exclusively in women and characterized by chronic pain. The essay looks at how metaphors are employed in living and narrating endometriosis in medical, social, and cultural settings that are highly skeptical of women’s pain and trace a shift in the use of pain metaphors towards an acceptance of the pain experience, which is conceptualized as empowering by the climax of the narrative. (shrink)

Chronically ill conditions are particularly difficult to manage because of their impact both on the social and on the corporal sphere to such an extent as to involve a series of problems that negatively alter the quality of life of affected patients. Chronicity has also a considerable ef-fect on social capital. In the current literature, it is known that social capital may contribute to a range of advantages to people health. Chronic Venous Disease (CVD) includes several pathologi-cal alterations of the (...) venous system of the lower limbs that cause a wide range of symptoms and signs. The aim of this study is to explore, with a qualitative approach, the dynamics of social cap-ital within people's experience of CVD and describe the roles of family and friends and the health care system. The method used is based on face-to-face semistructured interviews was performed, following the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Six-teen patients were included: 11 women and 5 men. The results obtained are completely in line with the current literature, which shows a certain difficulty in terms of daily activities, pain management; work-related difficulties; non-coverage of healthcare costs for medications and drugs prescribed. In the context of social capital, the bonding social capital of the patients inter-viewed was more positively perceived in the role of CVD management than by the patients' fami-lies. Another interesting result concerns the total absence of knowledge of patient associations with CVD. Thus, alongside the biographical destruction that CVD entails, there is evidence of the scarce relevance and presence of health policies capable of improving the quality of life of these people not only from a social and medical point of view but also from an economic point of view. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:It Is Going to Be a Long Clinic DaySalvador Cruz-FloresIt was a routine neurology clinic day. I entered the room where one of the residents was seeing a patient that we will call Patty, a 32-year-old long-standing epilepsy patient. Patty was sitting in the chair with her husband by her side. She started screaming at me, complaining that she was tired of feeling sick and unable to do anything. (...) She had been in and out of emergency rooms with a variety of complaints, from passing out to dizziness with nausea and vomiting. She was visibly angry and started cursing me with direct expletives and blaming me for all her ailments.Her husband was quiet and, at times, would cover his face as if he was embarrassed. I felt an initial burst of anger. I felt my face getting red. I made a great effort to stay quiet, leaned on the exam table facing them, lowered my voice, and braced to take the barrage of insults that were coming my way. I had to make a strong conscious effort to control my emotions and let her vent. I felt that if I responded in kind, I would inflame the situation. Moreover, a resident and a student working with me that day were also present in the room, and I felt it was my duty to behave professionally, so I sat and tried to do active listening with the idea of offering solutions to her complaints. I am not sure how long the event lasted, but it seemed like an eternity. As she slowed down, I apologized for making her feel not cared for, repeated some of her complaints, and tried to offer solutions to them, but she would not have it and did not accept anything I said. She wanted to get her prescriptions and leave the clinic. I offered to have one of my colleagues do the follow-up as she really did not want to see me anymore.Patty is one of those patients that when you see the name in the schedule, you cringe and tell yourself, it is going to be a long clinic day. She could be in the group of patients who are considered very difficult. Before me, she had been seen by several other neurologists. They likely also preferred not to see her on the schedule because she is one of the 20–30% of patients that have a type of functional psychogenic disorder that becomes more complicated because of the coexistence of epileptic seizures along with non-epileptic psychogenic events. The latter is a more problematic event because it does not respond to pharmacological treatment and causes a lot of disability. The best way to establish whether an event is a true epileptic event or a non-epileptic psychogenic event is to do continuous electroencephalographic monitoring to capture as many events as possible on video. I tried different combinations of medications to no avail and with significant side effects. I tried to set her up for electroencephalogram home monitoring to tease the epileptic and psychogenic events apart. In truth, her social circumstances, insurance coverage, and economic situation made it impossible to do so. Every time she came to the clinic, she had a multitude of complaints, and she would ask for a medication to treat the problem. Any mention of the potential psychogenic nature of her problems would result in a defensive attitude "so you are saying I am crazy." We discussed multiple times the need to be careful with the medications and the potential bad side effects. I wanted to help her, but with every visit, there seemed to be a barrier, and the visit would end on bad terms. At least, that is how I felt. I was left every time, with a feeling of frustration. I believe that she left the clinic feeling the same. That day, I left the clinic upset and depressed. I tried to convince myself I had done all I could to help her. I just could not understand why this was the result.Several years have passed since I have seen Patty in the clinic. She certainly has not... (shrink)

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a highly contested illness. This paper analyzes the discursive production of knowledge about, and recognition of ME/CFS. By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position. In focusing on the case of the Dutch newspaper reporting about ME/CFS, this paper shows that the debate about this condition predominantly revolves around the ways (...) in which people who make truth claims are represented. In being portrayed as gendered, affectatious, formerly very able, fanatical, or benevolent, people with ME/CFS are constructed as non-/credible. In the debate about what causes ME/CFS, by contrast, the production of non-/credible knowledge focuses more on the content of epistemic positions. Actors in this debate argue that they know the (clear) causes for the illness, something which functions as a discursive strategy to establish and enhance their credibility. This paper contends, however, that since this discursive demarcation of causes is consistently infused with uncertainty – with multi-interpretability, with diffuse explanations, and absence of current knowledge – the credibility of these actors’ epistemic position is undercut rather than established. (shrink)

Chronic diseases are the main disease burden worldwide, leading to premature deaths and poor individual and population health outcomes. Although modern medicine has made significant progress in developing effective treatments, only around 50% of people follow long-term treatment recommendations in high-income countries and presumably even less in low-income and middle-income countries.1 Health outcomes for chronic diseases follow a social gradient across socioeconomic groups, suggesting that the 50% adherence rate distributes unequally across social groups, affecting those who live in disadvantage the (...) most despite universal health coverage.2 Bioethicists have largely ignored inequalities that arise from differences in adherence to long-term treatments and the importance of the ethical dimension of chronicity for clinical practice. As I discuss in detail elsewhere, the concept of ‘chronic disease’ lacks a successful and agreed definition, failing to be structured in a traditional way and allowing for a disjunctive group of diseases to fall under the concept.3 Still, the main element that helps distinguish ‘chronic diseases’ from all other diseases is their long duration, so the noun chronicity can help demarcate and identify the nature of ‘chronic disease’. Drawing on conceptual analysis and phenomenological research on illness that highlight the tension between the cyclical and static elements of chronic disease, I have argued that chronicity has a phenomenological sense beyond its …. (shrink)

Imagination and idealism are particularly important creative epistemic virtues for the medical sciences if we hope to improve the health of the world’s ageing population. To date, imagination and idealism within the medical sciences have been dominated by a paradigm of disease control, a paradigm which has realised significant, but also limited, success. Disease control proved particularly successful in mitigating the early-life mortality risks from infectious diseases, but it has proved less successful when applied to the chronic diseases of late (...) life (like cancer). The time is ripe for the emergence and prominence of a supplementary medical research paradigm, the paradigm of ‘healthy ageing’ which prioritises the goal of rate (of ageing) control rather than disease control. This is the difference between extending the human healthspan versus extending survival by managing (or trying to eliminate) the multi-morbidities, frailty and disability currently prevalent in late life. The idealism of the disease control paradigm is myopic because it ignores the health constraints imposed by the inborn ageing process itself, a biological reality which is already inflicting significant economic and disease burdens on the world’s ageing populations. Unless the medical sciences retard the rate of biological ageing, these problems will continue to be amplified as larger numbers of persons survive into late life. (shrink)

Variability in the symptom experience in patients diagnosed with chronic conditions may be related to social determinants of health (SDoH). The purpose of this critical review was to (1) summarize the existing literature on SDoH and symptom clusters (i.e., multiple, co‐occurring symptoms) in patients diagnosed with common chronic conditions, (2) evaluate current variables and measures used to represent SDoH, (3) identify gaps in the evidence base, and (4) provide recommendations for the incorporation of SDoH into future symptom cluster research. We (...) identified 118 articles including information on SDoH in chronic condition symptom cluster research. Articles primarily focused on cancer populations. Few articles had the explicit purpose of investigating relationships between SDoH and symptom clusters, and the inclusion of SDoH was often limited to variables used to describe samples. Future studies should be designed to “move beyond Table 1” in their utilization of SDoH as variables and examine relationships between SDoH and symptom clusters. Attention should be paid to the appropriateness of measures being used to collect information on SDoH, and analysis methods that estimate causal connections between variables should be considered. Research regarding the relationship of SDoH with symptom clusters in patients with chronic conditions has the potential to reveal mechanisms of symptom disparities and guide changes to alleviate these disparities. (shrink)

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive comprehensive reproductive counseling, including (...) information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Asthma:Strangling the Caged Bird (Something Like a Prayer)Imani Perry (bio)Yet do a marvel at this curious thing; To make a poet black and bid him sing!– Countee CullenI know why the caged bird sings, ah me,When his wing is bruised and his bosom sore,—When he beats his bars and he would be free;It is not a carol of joy or glee,But a prayer that he sends from his heart's (...) deep core,But a plea, that upward to Heaven he flings—I know why the caged bird sings!– Paul Laurence DunbarAsthma is an inflammation of the airways. But that word in a Black American life is an associative one. It is emergency room visits, "treatments," and jackleg care. It is death's door. It is the vague feeling that something in the bedroom walls, school corridors, cells, coming up from the pavement, is eking away at your life. We speak of it knowingly and frequently."How is your asthma?" When Dr. Bird asked me that question, I was alarmed. I'd forgotten I had ever received the diagnosis. But there it was in my chart. There are so many words about me housed in that digital file. I expect there's more than I could guess. The chart itself is a testament to access. Not everybody has the protective surveillance of a chart or an ID, much less medical insurance. Mine is far more crowded than I'd prefer.The conditions of my life and body have made it such that I could forget my own asthma. But I think about asthma all the time, because it has snaked through my family and friends and communities. I have written, more than once, that the most powerful statement that hip hop leaves us with is this: An art form made by generations ravaged by environmental racism is defiantly profound because it depends upon the mastery of breath. Breath control is as much its hallmark as rhyming. Snatching oneself from the gates of a breath-thieving hell, with a heavy bass line, is its testimony. [End Page 213]Have you ever gasped for air? You grab at it and get almost nothing. Flail. You are rendered indeliberate. Panic is the only option in that moment. Invisible hands crush your windpipe but never touching a bone. (After this, how could you not believe in ghosts?) When you get out of it, relief spreads over you. It is euphoric at first. Then trauma settles and you ritually hold your breath and neck muscles, hypervigilant for the next time though praying against it.Black people have the highest rates of asthma in the United States. Black women are most likely to die of the disease. I am not a scientist so I can speculate about this terrible fact freely. I think it is because Black women's roles require a tamping down of suffering in the service of labor for others. Private keening and public fortitude. There is poison in our post-coloniality of being.That said, the post-coloniality of being doesn't belong alone to those with colonized and Jim Crowed histories. It is a shared though wildly unequal condition. The post-coloniality of being characterizes this epoch, post- ages of revolution and decolonization and social transformation, in which we (the big we, not the freedom-fighter we) against all better dreams, remain committed to being suffocated. And as the climate crisis shows its face, we have to admit that everybody's breath is shallowing. Everyone's body is being invaded by the ethic of accumulation, to a greater or lesser extent. And that "lesser" promise is the worst kind of seduction. Air purifiers and green detergents are nothing but stop-gap measures in a world bent on its own destruction.I could say, we, Black women, are like canaries in the coal mine. But the metaphor hits too close to home. It is too true a thing to attach it to the glibness of literary figurative language. Our airways are literally closing in. In the Black South, to be "strangled" doesn't require someone's hands around your throat. It is used the... (shrink)

Brazil was the largest slave-keeping territory in the Western Hemisphere, and the lack of governmental policies benefitting African-descendants as well as fantasies regarding their inferiority contributed to the continuity of racism in this country. Even after the abolition of slavery, the Brazilian government perpetuated racist behaviours by attracting European immigrants with the goal of “whitening” the population. These historical events not only have socioeconomic and cultural impact but also influence the health of the black population. Chronic kidney disease (CKD) is (...) a public health problem that can lead to a decrease in kidney function and necessitate dialysis treatment in all populations. However, this problem is more concerning in people of African heritage since it is more prevalent in black populations. Recent studies have associated CKD with the genetic background of African populations by linking it to genetic variants related to protection against sleeping sickness, which is endemic in Africa. Thus, it is fundamental to emphasize the importance of studies investigating populations of African descent or featuring African admixture because they can improve strategies for CDK prevention and public health policies aimed at the black population. These studies have illustrated the need for specific public actions regarding particular populations, especially those that have been marginalized by secular processes of exclusion and subjugation. (shrink)

Ageing populations and rising rates of chronic disease globally have shifted key elements of disease management to ideas of integrated care and self‐management. The associated policies and programmes often focus on intervention and support beyond the sites of the hospital and clinic. These shifts have significantly impacted the delivery and practice of nursing for both nurses and the clients with whom they work. This article argues that Foucault's comments on space, place and heterotopia (1986) are useful in exploring these changes (...) from a philosophical perspective, to draw out the complexity of these programmes and add texture to discussions on the ways these shifts to localisation and the dominant discourses of self‐management and responsibility have reconfigured nursing practices. The theoretical discussion is augmented with illustrations from an Australian integrated health care programme. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Stories of Families with Chronically Ill Pediatric Patients during the War in UkraineVita VoloshchukFebruary 24th was a day that has left a mark in the memory and on the lives of every Ukrainian person. My husband and I work together [End Page E5] in a hospital. He had gone into work early to conduct a kidney transplant that had been scheduled for that day. Suddenly, whilst on my way (...) to work that morning, I heard a strange sound—it was an air-raid siren. Before that, I had never heard such a sound. I went through all the possible options of what it could be. Of course, watching the morning news had never been a habit either. The next thing that astonished me was that the taxi I had ordered was taking an unnaturally long time to turn up. When I got into the taxi, I noticed that the taxi driver was really upset and silent for half of the journey. He then said, “A war has begun...”“War? So? The war has been going on since 2014.”“You don’t understand,” he said. “Russia is launching missile attacks all over the territory of Ukraine; Russian troops are coming from the east and north of Ukraine. They want to capture the capital of Ukraine.” (Kyiv).Arriving at the hospital, I saw confused faces everywhere. The morning meeting began with a discussion of how we were to act in any possible situation that may occur. We were to discharge patients from the hospital, as many as possible. The arrangement of a bomb shelter began (although I didn’t even think that such a thing existed in our hospital), along with the strengthening of the hospital’s windows, and the increase of supplies such as medicine and food. Of course, the boy who expected a kidney transplant did not receive it because no one knew what to expect at any second or where a hostile Russian missile might hit, as Russian missiles hit not only military objects but residential buildings, hospitals, and memorials as well.Children who had to continue therapy remained in the hospital. As soon as we heard the sound of an air-raid siren, we had to go down into the bomb shelter. This happened 5-10 times per day. Families with palliative and chronically ill children began to call and ask for advice on how to proceed in such a situation. As many children were on artificial respiration devices, others needed oxygen therapy, and sputum of mucus from the upper respiratory tract. All this required uninterrupted power supplies and appropriate equipment. Later that day, a doctor from Poland called me and asked if our pediatric patients needed help, saying it would be better if they were moved to Poland, where they would be safer and have the correct equipment. We started organizing evacuations for chronically ill and palliative patients.Seven days after the war began, parents from other regions, where the situation was more dangerous, began calling, asking for help evacuating. The hospital began to work intensively round the clock. Some patients moved in, and others were evacuated abroad. Some did not want to go. They continued treatment in the hospital, which turned into a hub for patients who had come from more dangerous, occupied territories; patients who were forced to leave their motherland to continue treatment.Since the beginning of the war, I have been responsible for transferring palliative patients and other patients with gastrointestinal diseases abroad. After the massive invasion, everything changed in our country. It is important to say that during the war, Lviv is safer than any other Ukrainian city, still air-raid sirens often go off, and everyone needs to run immediately to shelters for their safety. Palliative patients need special care. It is very difficult to run with patients several times per day during an air-raid siren or live with these children for a long time (2-3 weeks) in shelters because of the explosions occurring around them.It is impossible to move some patients to safety because they need appropriate medical equipment or mechanical ventilation is necessary. In shelters, there are crowds, and the high risk of... (shrink)

A diabetic woman awakens from a coma having forgotten the last ten years of her life. A Haitian immigrant has nightmares that begin bleeding into his waking hours. A retired teacher loses the use of her right hand due to pain of no known origin. Noga Arikha began studying these patients and their confounding symptoms in order to explore how our physical experiences inform our identities. Soon after she initiated her work, the question took on unexpected urgency as Arikha's own (...) mother began to show signs of Alzheimer's disease. In The Ceiling Outside, Arikha recounts this life-changing experience and grapples with the unbreakable links between our bodies and our sense of self. Weaving together stories of her subjects' troubles and her mother's decline, Arikha searches for some meaning in the science she has set out to study. The result is an unforgettable journey across the ever-shifting boundaries between ourselves and each other."--. (shrink)

That aluminum is fatally toxic is beyond doubt, demonstrated by mass human poisoning at Camelford in Cornwall in Britain in 1988 (chapter 18) and by occasional fish kills (p. 49). Aluminum may also be a contributing factor in a number of human diseases, in particular those involving brain and nerves (p. 124) — autism, Alzheimer’s disease (AD) (chapter 14), Parkinson’s disease, multiple sclerosis. Aluminum salts used in kidney dialysis may be responsible for dialysis-related encephalopathy (pp. 38, 79). Aluminum adjuvants in (...) vaccine can cause macrophagic myofasciitis (MMF: inflammation and associated microscopic muscle necrosis at the injection site) as well as such whole-body ailments as chronic fatigue syndrome and marked cognitive deficits (Rigolet et al. 2014); one middle-aged individual injected with five aluminum-adjuvanted vaccines within 4 weeks became work-disabled (pp. 72-73). Studying the possible dangers associated with aluminum adjuvants in vaccines is complicated by the fact that aluminum acts as an antigen as well as an adjuvant — the immune system generates antibodies against aluminum itself, so that later exposures to aluminum might produce an antibody cascade capable of damaging any of the tissues in which aluminum had accumulated (pp. 73-76). Christopher Exley has studied aluminum in relation to human health for some 35 years. This book summarizes his work and cites the pertinent primary publications (some 200) in appropriate peer-reviewed journals. The book also offers quite convincing evidence of the determined efforts by a variety of vested interests to disparage and suppress Exley’s work and findings. In my opinion, the published work summarized in this book makes a plausible case based on empirical evidence that aluminum may be a contributing causative factor in neurological and nerve diseases. Further, Exley suggests fully detailed mechanisms and quite plausible for how that comes about. Beyond that, he points to a quite fundamental a priori reason why aluminum, among all the other elements and metals, might be so uniquely dangerous. It is the third most abundant element in the Earth’s crust (after oxygen and silicon), yet there are no known biological uses of aluminum. By contrast, several other metals and non-metals are essential components of some biological systems, for example, iron in hemoglobin in blood (pp. 5-6, 11). Those two facts make it far from implausible that absorption of aluminum could be biologically harmful, by competing with or replacing other metals, or perhaps just because of its chemically oxidative properties. But if all that is so, how has the Earth’s biosphere flourished for billions of years without succumbing to the toxicity of the super-abundant aluminum? (shrink)

Living with a chronic condition represents a strenuous experience that often could be lived as a sequence of waiting and crisis times. Therapeutic path incidents could represent however a catalysts and revelatory time, useful to patients to discover their own resources. A qualitative study according to the phenomenological hermeneutic perspective was conducted to understand the kind of skills expressed by the patients during a difficult episode, and the characteristics that identify patients who can overcome them better. From September 2019 to (...) August 2020 twenty-three patients followed-up in four Hospital Units of Northeastern of Italy were enrolled. All the patients described an episode linked whit their pathological condition; they mentioned mainly supportive, reactive, or behavioral strategies and an acceptance attitude. The sample characteristics may explain the recurring acceptance attitude; however, the younger individuals, those with a higher level of education and those who faced precedent negative life experiences seem to better overcome challenging events. It can’t be taken for granted that patients possess all the skills necessary to overcome the frequent challenging episodes they have to face; for this reason, healthcare professionals should assess their learning and reactive attitude in order to tailor for them therapeutic education paths. (shrink)

This paper points to a more expansive conception of grief by arguing that the losses of illness can be genuine objects of grief. I argue for this by illuminating underappreciated structural features of typical grief — that is, grief over a bereavement — which are shared but under-recognized. I offer a common chronic illness, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), as a striking case study. I then use this analysis to highlight some clinical challenges that arise should this claim receive uptake (...) in clinical practice. Extant literature on CFS/ME tells us that rates of comorbid depression are atypically high. If one accepts that people with CFS/ ME can grieve over losses associated with the condition, and that grief can be easily mistaken for depression in this context, this might suggest that rates of comorbid depression are inflated. I show, however, that the challenge of distinguishing between healthy and pathological grief arises in its place, and is just as tricky to solve. (shrink)

Ethical guidelines protecting medical research participants have been criticized for stripping the sociocultural contexts of research. This critique is urgent considering ongoing calls to account for participant diversity in recruitment and inclusion procedures. Our intersectional analysis of illness narratives explores how sociostructural factors might play a role in participants’ exposure to research-related harm in clinical trials. Although widening participation does respond to generalizability concerns, we argue that gendered, classed, and ableist processes of self-silencing could simultaneously enhance risk of harm for (...) participants with multiple oppressed identities. To prevent this, researchers might actively involve participants when designing trials. (shrink)

BackgroundCo-creation allows to develop tailored interventions in chronicity and to increase patients’ engagement. Considering the interacting nature of physical, psychological, and social domains in multiple sclerosis, a biopsychosocial approach to care is crucial.AimsThis paper aims to present an example of a co-creation process in the context of chronic diseases preferences and perspectives of young adults with multiple sclerosis and healthcare professionals on the relevance, objectives, and modalities of a biopsychosocial intervention and on strategies/barriers to participation.MethodsA participatory mixed-method approach in three (...) consecutive steps was implemented: online surveys with YawMS and HCPs, online focus groups with YawMS, consultation with an advisory board composed by YawMS, HCPs and researchers. For the survey, descriptive statistics and inductive content analysis have been used for quantitative and qualitative analysis, respectively. FGs and AB were used to deepen the understanding of the survey’s results.ResultsAn integrated intervention is extremely relevant according to the perspectives of the main stakeholders. Helping disease acceptance, providing stress management strategies, and supporting emotional expression emerged as the most relevant psychological objectives according to participants. Having tangible benefits, being tailored, and fostering interpersonal relationships emerged as the main preferred characteristics of physical activity. Preferences emerged on the modalities and timing of the intervention, with a venue unrelated to the disease strongly supported. Both HCPs and YawMS highlighted as the most valuable advantages of conducting the intervention online the increased accessibility, while the main limit was the restriction to social interaction. Accessibility and lack of time resulted as the main barriers to participation.ConclusionThe co-creation process gave valuable information on preferences and perspectives of main stakeholders on objectives, modalities, and strategies to improve participation which has been used in the design of the ESPRIMO biopsychosocial intervention. Those results might inform future intervention development in the field of chronicity. The current paper outlined a co-creation methodology which might be replicated in future research on other conditions of vulnerability. (shrink)

ObjectiveBulimia nervosa and binge eating disorder are eating disorders characterized by recurrent binge eating episodes. Overlap exists between ED diagnostic groups, with BE episodes presenting one clinical feature that occurs transdiagnostically. Neuroimaging of the responses of those with BN and BED to disorder-specific stimuli, such as food, is not extensively investigated. Furthermore, to our knowledge, there have been no previous published studies examining the neural response of individuals currently experiencing binge eating, to low energy foods. Our objective was to examine (...) the neural responses to both low energy and high energy food images in three emotive categories in BN and BED participants.MethodsNineteen females with BN or BED, comprising the binge eating group, and 19 age-matched healthy control ’s completed thorough clinical assessment prior to functional MRI. Neural response to low energy and high energy foods and non-food images was compared between groups using whole-brain exploratory analyses, from which six regions of interest were then selected: frontal, occipital, temporal, and parietal lobes; insula and cingulate.ResultsIn response to low energy food images, the BEG demonstrated differential neural responses to all three low energy foods categories compared to HCs. Correlational analyses found a significant association between frequency of binge episodes and diminished temporal lobe and greater occipital lobe response. In response to high energy food images, compared to HC’s, the BEG demonstrated significantly decreased neural activity in response to all high energy food images. The HC’s had significantly greater neural activity in the limbic system, occipital lobe, temporal lobe, frontal lobe, and limbic system in response to high energy food images.ConclusionResults in the low energy food condition indicate that binge frequency may be related to increased aberrant neural responding. Furthermore, differences were found between groups in all ROI’s except the insula. The neural response seen in the BEG to disgust food images may indicate disengagement with this particular stimuli. In the high energy food condition, results demonstrate that neural activity in BN and BED patients may decrease in response to high energy foods, suggesting disengagement with foods that may be more consistent with those consumed during a binge eating episode. (shrink)

BackgroundCommonly applied measures of symptoms of anxiety are not sensitive to disease-specific anxiety in patients with chronic obstructive pulmonary disease. There is a need for validated instruments measuring COPD-specific anxiety. Therefore, we translated the COPD-Anxiety Questionnaire into Danish and performed an initial validation of the psychometric properties in a sample of patients with COPD.Materials and MethodsTranslation procedures followed the World Health Organization guidelines. Participants with COPD completed questionnaires measuring COPD-specific anxiety, general psychological distress as well as variables related to COPD, (...) quality of life, and socio-demography.ResultsA total of 260 patients with COPD completed questionnaires. The Danish version of CAF-R-DK demonstrated acceptable Cronbach’s α values that were comparable with those of the original CAF. As expected, the CAF-R-DK showed positive correlations with convergent constructs and negative correlations with discriminant constructs. However, the results for specific subdomains of the CAF-R-DK indicated inconsistency in the underlying concept of disease-specific anxiety, which was also suggested based on the subsequent confirmatory and exploratory factor analyzes.ConclusionThe CAF could serve as an important supplement to generic psychological distress screening of patients with COPD in somatic health care settings, and the questionnaire is now available in Danish. Translation into other languages is needed with the purpose of obtaining data for further testing the psychometric properties of the questionnaire. (shrink)

BackgroundChronic airway diseases are prevalent and costly conditions. Interdisciplinary rehabilitation programs that include Acceptance and Commitment-based components could be important to tackle the vicious circle linking progression of the disease, inactivity, and psychopathological symptoms.MethodsA retrospective evaluation of routinely collected data of an interdisciplinary rehabilitation program was performed. The program included group sessions including patient education, breathing exercise, occupational therapy and an ACT-based psychological treatment, and individual sessions of physical therapy. Demographic data, clinical characteristics of the patients and the values of (...) outcome variables before treatment, at discharge, at 3 months, and at 6 months were extracted from medical records. Multiple imputation was employed to address missing data. Linear mixed models were employed to assess changes over time. Multivariable logistic regression was performed to assess predictors of a minimum clinically important change of health status from baseline to the 6-months follow-up.ResultsData from 31 patients with chronic obstructive pulmonary disease and 12 patients with bronchiectasis were extracted. Health status improved from baseline to discharge to the 3 months follow-up, but not to the 6 months follow-up. Anxiety and depression improved across all the time points. Quality of life did not improve over time. Having a worse health status at baseline and fewer depressive symptoms were significantly associated with achieving a minimum clinically important change of health status at 6 months. The effects of the interdisciplinary program were not different for patients with COPD or with bronchiectasis.DiscussionInterdisciplinary programs including ACT-based components are promising treatments for the rehabilitation of patients with chronic airway diseases. (shrink)

Night eating syndrome is currently classified as an Other Specified Feeding or Eating Disorder under the Diagnostic Statistical Manual−5. This systematic review aims to consolidate the studies that describe the sociodemographic, clinical and psychological features of NES in a population of patients with eating disorders, obesity, or those undergoing bariatric surgery, and were published after the publication of the DSM-5. A further aim was to compare, where possible, NES with BED on the aforementioned variables. Lastly, we aimed to appraise the (...) quality of the studies being included in the review. We conducted a systematic search on three databases which resulted in the selection of 22 studies for the review. We included the articles that studied patients with NES and their sociodemographic, clinical and psychological features in a clinical population, through a quantitative study design. Articles were excluded if the NES patients included in the study had a comorbid psychological disorder, and/or the sample was collected from a university/non-clinical population, and/or the study design was qualitative, and/or NES features were compared with any other disorder, except BED. Our study found that no conclusions about the link between any sociodemographic feature and an NES diagnosis could be made. Further, NES patients presented with elevated ED pathology and higher occurrence of depressive symptoms than controls. Contrary to the literature suggesting that NES and Binge Eating Disorder patients often report overlapping features, questioning the validity of NES as an ED diagnosis, we found that BED can be differentiated from NES by the higher occurrence of emotional eating, body related concerns and abnormal eating episodes. The review also suggested an overlap between NES and Sleep-Related Eating Disorder. We recommend that it is essential to study NES as an independent disorder to further develop its diagnostic criteria and treatment options, thereby, increasing the quality of life of the patients suffering from this syndrome. (shrink)

Anhedonia is the diminished motivation and sensitivity to pleasurable stimuli. It has been reported to be more prevalent in patients with chronic pain as compared to healthy controls. Endometriosis is a chronic inflammatory systemic disease with a significant psychosocial impact that compromises wellbeing and the day-to-day life of patients. Women with endometriosis show significant psychological distress, even more pervasive when chronic pelvic pain is present. In the current review we will discuss the role of anhedonia in endometriotic chronic pelvic pain. (...) We will also present new lines of research that could lead to more fully clarifying the psychological impact of endometriosis and its detrimental repercussions to quality of life and mental health. (shrink)

Deep brain stimulation is part of state-of-the-art treatment for medically refractory Parkinson’s disease, essential tremor or primary dystonia. However, there are multiple movement disorders that present after a static brain lesion and that are frequently refractory to medical treatment. Using Holmes tremor as an example, we discuss the effectiveness of currently available treatments and, performing simulations using a Markov Chain approach, propose that DBS with iterative parameter optimization is expected to be more effective than an approach based on sequential trials (...) of pharmacological agents. Since, in DBS studies for HT, the thalamus is a frequently chosen target, using data from previous studies of lesion connectivity mapping in HT, we compared the connectivity of thalamic and non-thalamic targets with a proxy of the HT network, and found a significantly higher connectivity of thalamic DBS targets in HT. The understanding of brain networks provided by analysis of functional connectivity may thus provide an informed framework for proper surgical targeting of individual patients. Based on these findings, we argue that there is an ethical imperative to at least consider surgical options in patients with uncommon movement disorders, while simultaneously providing consistent information regarding the expected effectiveness and risks, even in a scenario of surgical-risk aversion. An approach based on n-of-1 DBS trials may ultimately significantly improve outcomes while informing on optimal therapeutic targets and parameter settings for HT and other disabling and rare movement disorders. (shrink)

Speech is a primary means of human communication and one of the most basic features of human conduct. Voice is an important part of its subsystems. A speech disorder is a condition that affects the ability of a person to speak normally, which occasionally results in voice impairment with psychological and emotional consequences. Early detection of voice problems is a crucial factor. Computer-based procedures are less costly and easier to administer for such purposes than traditional methods. This study highlights the (...) following issues: recent studies, methods of voice pathology detection, machine learning and deep learning (DL) methods used in data classification, main datasets utilized, and the role of Internet of things (IoT) systems employed in voice pathology diagnosis. Moreover, this study presents different applications, open challenges, and recommendations for future directions of IoT systems and artificial intelligence (AI) approaches in the voice pathology diagnosis. Finally, this study highlights some limitations of voice pathology datasets in comparison with the role of IoT in the healthcare sector, which shows the urgent need to provide efficient approaches and easy and ideal medical diagnostic procedures and treatments of disease identification for doctors and patients. This review covered voice pathology taxonomy, detection techniques, open challenges, limitations, and recommendations for future directions to provide a clear background for doctors and patients. Standard databases, including the Massachusetts Eye and Ear Infirmary, Saarbruecken Voice Database, and the Arabic Voice Pathology Database, were used in most articles reviewed in this article. The classes, features, and main purpose for voice pathology identification are also highlighted. This study focuses on the extraction of voice pathology features, especially speech analysis, extends feature vectors comprising static and dynamic features, and converts these extended feature vectors into solid vectors before passing them to the recognizer. (shrink)

This paper uses the survival strategies of food shelf clients to explore how food access, chronic disease, and spatial isolation shape the lives of low- and no- income urban citizens. The abundant availability of unhealthy food intersects with the presence of long-term health conditions to create a marginalized urban space where low quality commodity food is available, but exacerbates existing health conditions, is difficult to access, and does little to create food security. To survive, clients have normalized a sustenance strategy (...) of going to multiple food serving sites, carrying food long-distances and using SNAP benefits to make ends meet. However, this nourishment strategy is time-consuming and unsafe, demanding that people put themselves in precarious positions and push their bodies farther physically than is healthy. These food procurement strategies exacerbate their marginalization. Qualitative data from food shelf users is used to develop a theory of ambient struggling wherein the struggle for food access is unhealthy and time-consuming, making it difficult to improve their standard of living. (shrink)

Inflammatory bowel disease is chronic and incurable. Imperious diarrhea, rectal bleeding, fatigue, and weight loss, the main manifestations, cause a decrease in the quality of the patient’s personal and professional life. The objectives of this study were to identify a possible relationship between early maladaptive schemas and disease activity status using logistic regression, to identify the prevalence of early maladaptive schemes in patients and to propose a psychotherapeutic intervention plan. The following were found in a sample of 46 patients aged (...) 16–76 years. An increase in the domain overvigilance and inhibition score had a significant effect, with an increase of 1.137 CI95% [1.031, 1.254] of the risk of the disease being diagnosed as active. High and very high scores were observed for the emotional deprivation scheme and dependence/incompetence, vulnerability to harm and illness and subjugation schemas. The results show that the proposed model could predict and reconfirm the diagnosis; patients have specific psychotherapeutic needs. The therapeutic goal would be to offer care, empathy and protection, to strengthen self-confidence, to make patients realize that they have the ability to cope, to provide permission, encourage the patient to experiment, and guide the patient to express their anger healthily. The therapy scheme’s intervention could lead to increased long-term disease management capacity and, consequently, reduce costs directly and indirectly caused by this condition. (shrink)

ObjectiveThis study aims to investigate the lived experience in patients with obstructive sleep apnea syndrome and comorbid obesity following after continuous positive airway pressure therapy made with the disease the device, and to identify barriers and facilitators to the use of CPAP to improve rehabilitation provision and aid in disease self-management.MethodsQualitative research was conducted using three focus groups with a representative sample of 32 inpatients undergoing a 1-month pulmonary rehabilitation program at the IRCSS Istituto Auxologico Italiano San Giuseppe Hospital, Verbania, (...) Italy. The focus groups were recorded on tape, and contemporaneous notes were made. The tapes were transcribed verbatim, and Interpretative Phenomenological Analysis was used to develop themes.ResultsSix main themes were extracted: Living the diagnosis as a shock; You should not sleep on it: the importance of prevention; The adjustment to CPAP; Barriers and facilitators to the use of CPAP; Three in a bed; and The relationship with the healthcare system.ConclusionResults of this study suggest potential avenues for interventions to increase adherence to CPAP, including the provision of information and continued support. Individual counseling providing strategies aimed at helping the person to cope with the emotional problem and relational difficulties associated with the use of CPAP, and at strengthening self-efficacy and self-management skills are also encouraged for optimal care during the rehabilitation program. (shrink)

Multiple Sclerosis is a debilitating chronic autoimmune disease of the central nervous system that results in lower quality of life. Medication adherence is important for reducing relapse, disease progression, and MS-related symptoms, particularly during the early stages of MS. However, adherence may be impacted by negative emotional states. Therefore, it is important to identify protective factors. Past research suggests that the ability to discriminate between negative emotional states, also known as negative emotion differentiation, may be protective against enactment of maladaptive (...) risk-related behaviors. However, less is known as to how NED may promote adaptive health behaviors such as medication adherence. Utilizing weekly diaries, we investigated whether NED moderates the association between negative affect and medication adherence rates across 58 weeks among patients newly diagnosed with MS. Results revealed that NED significantly moderated the relationship between negative affect and medication adherence. Specifically, greater negative affect was associated with lower adherence only for individuals reporting low NED. However, this link disappeared for those reporting moderate to high NED. Building upon past research, our findings suggest that NED may promote adaptive health behaviors and have important clinical implications for the treatment and management of chronic illness. (shrink)

BackgroundCognitive behavioral therapy has well-characterized benefits in alleviating diseases associated with depression, anxiety, and obesity, resulting in a marked improvement in the patient’s quality of life. There are some studies regarding the effects of CBT on patients with polycystic ovary syndrome. However, there is still no report of a meta-analysis for systematic assessment.ObjectivesThis study aimed to evaluate the effectiveness of CBT in improving weight loss, anxiety, depression, life quality, compliance, and pregnancy outcomes in patients with PCOS.MethodsStudies regarding CBT related to (...) PCOS in PubMed, Cochrane library, Embase, ClinicalTrials.gov, CNKI, and WANFANG DATA were searched for up to 19 November 2020. A random-effects model was used to perform a meta-analysis.ResultsEight trials regarding CBT compared with lifestyle modification and routine treatments were included. No differences in depression, body mass index, or overall life quality were evident between CBT and control groups; however, anxiety and quality of life in hirsutism were significantly improved. For secondary outcomes, both patient compliance and pregnancy rate were improved, but no significant change in pregnancy loss rate was identified.ConclusionCBT exhibited obvious advantages in the alleviation of anxiety, improvement of quality of life in hirsutism, and increase of compliance and pregnancy rate in patients with PCOS. Larger and higher-quality randomized controlled trials are needed to clarify the role of CBT in PCOS.Systematic review registration[https://www.crd.york.ac.uk/PROSPERO/], identifier [CRD42021225856]. (shrink)

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease (CKD), involving dialysis or conservative care. Shared decision-making (SDM) is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient’s values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further implementation. (...) A shift from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient’s perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient’s relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. (shrink)

Tremor of the upper extremity is a significant cause of disability in some patients with multiple sclerosis. The MS tremor is complex because it contains an ataxic intentional tremor component due to the involvement of the cerebellum and cerebellar outflow pathways by MS plaques, which makes the MS tremor, in general, less responsive to medications or deep brain stimulation than those associated with essential tremor or Parkinson's disease. The cerebellar component has been thought to be the main reason for making (...) DBS less effective, although it is not clear whether it is due to the lack of suppression of the ataxic tremor by DBS or else. The goal of this study was to clarify the effect of DBS on cerebellar tremor compared to non-cerebellar tremor in a patient with MS. By wearing an accelerometer on the index finger of each hand, we were able to quantitatively characterize kinetic tremor by frequency and amplitude, with cerebellar ataxia component on one hand and that without cerebellar component on the other hand, at the beginning and end of the hand movement approaching a target at DBS Off and On status. We found that cerebellar tremor surprisingly had as good a response to DBS as the tremor without a cerebellar component, but the function control on cerebellar tremor was not as good due to its distal oscillation, which made the amplitude of tremor increasingly greater as it approached the target. This explains why cerebellar tremor or MS tremor with cerebellar component has a poor functional transformation even with a good percentage of tremor control. This case study provides a better understanding of the effect of DBS on cerebellar tremor and MS tremor by using a wearable device, which could help future studies improve patient selection and outcome prediction for DBS treatment of this disabling tremor. (shrink)